Let's get started! Come and introduce yourself

jiselle16

Marilyn said:

@jiselle16 and @Sunflower Hi and Welcome! Great to have you on the site and I think you will find other younger women who share some of the same experiences that you are going through.  You might want to connect with @BrittMK @AmandaRoseRebs and/or read their introductions.  Sunflower, great to hear that you have connected with Elly Mayday and Young Adult Cancer Canada.  For those who don't know Elly Mayday, she is a well known Canadian plus size model diagnosed with ovarian cancer at age 25 and has just gone through a recurrence.  She is a supporter of Ovarian Cancer Canada and recently was presented with the Ovarian Cancer Canada Virginia Greene Award at the Love Her in Vancouver.  See http://ovariancanada.org/stories-and-media/feature-stories/2017/model-elly-mayday-recognized-for-raising-awareness

It must be tough to deal with  menopause at such a young age.  And a difficult juxtaposition to your friends having babies!  How do you handle that?  Do you have any tips for each other?  Do you have any stock phrases you have come up with if asked about having children?

Like @BrittMK mentioned, I too struggle with how to respond to people when they ask if I have children. Sometimes it is hard to just say "no" without rationalizing it with a response like "no, because I can't". I find more people realize that many women are sensitive to this question (whether they have had cancer or not), as so many women struggle with infertility, and as a result people aren't asking probing questions about kids as much.

What I find the most difficult or is a trigger point is when you are at the hospital and medical staff ask you if have ever been pregnant or you are planning to. I remember going in for my last CT scan and the technician asked me when I had my last period and if I could possibly be pregnant. I felt like yelling: "Have you not read my chart? I had a hysterectomy and my ovaries removed!". I know the medical staff have to ask, but sometimes it just feels insensitive.

robinsm

In some ways I had it easier than most because I knew as a teenager that I could not have children.  My husband knew this when we started dating and had to either accept it or move on.  It was still difficult when family and friends were pregnant and talking about their kids being the best thing in their life.  I have been very involved in my niece's and nephew's lives and with their children.  We are very involved in the lives of some of our friends children, and are God Parents for 3 of them. That still is not the same.  I followed a career for 20 years teaching children with severe developmental disabilities and loved every minute of my job.  It was always difficult when people who did not know my story would question when we were starting a family, were we planning on children or why did we not have children.  People need to be educated that these can be very hurtful questions in some circumstances.   Some of us did not choose to not have children.  With those who were persistent, I got so that I would be quite blunt and just say, "I can not have children.  I had Ovarian Cancer."  They didn't know how to respond.  they don't realize that it is none of their business. Even at the age of 53 I often get melancholy about not having children.  It does get easier but it never goes away.

As for menopause, I have never had to deal with that.  I have been on estrogen for about 35 years.  the Doctors have tried taking me off of it and the symptoms are so severe that they always end up putting me back on.  

MarilynOCC

@robinsm Hi!  Welcome to OVdialogue!  Your story is very different and so glad that you have joined the community!  Diagnosed at 11? Wow! You have lived with this disease for a long time so thank you for wanting to give back through the Walk of Hope and supporting other women.  I think you will also meet other women thinking about genetic testing too.   And, of course, another Marilyn is always welcome   Have any of your other relatives with ovarian cancer had genetic testing?

MarilynOCC

@jiselle16 @robinsm @BrittMK @Sunflower I think you are all very brave for talking about this subject and how you feel about not having children as a result of your surgery and treatment.  As you have each expressed, it must be very hard to respond to the same questions over and over again. I'm sure it is a difficult topic to discuss so thank you for being willing to share your experiences with each other but also for the women who might read your comments and who are not able to talk about their own yet.  

Lakeview

Hi.  My diagnosis of high grade serous ovarian cancer was confirmed when I had surgery on June 28th, 2017, at the age of 69.  This followed with the start of chemo, carboplatin & paclitaxel, four weeks later.  I have now completed my 3rd round, with 3 more to go. I struggle most of the first week after treatment but am able to life a relatively normal life for the two weeks following that.  Then there's another chemo treatment!   The neuropathy in my toes and fingers gets worse with each treatment.  I was interested to see on some posts that medical marijuana might be helpful with this.  Also was interested to see Nabilone (medical marijuana) in a pill form is helpful for sleeping.  I have great difficulty with sleeping!  I am at a place now where I have accepted what is happening to me which is making this detour in the road easier to travel. 

KarenL

@kittycat  I was scared too before starting chemo as all I knew about it was tv/movies but once I had my first session I realized it wasn't that bad.  It wasn't a picnic and every month it seemed a new side effect was bugging me but I was never throwing up or sick.  There are medicine that they can give you to help with any side effects plus your pharmacist can answer your questions too.  Since I go to the same pharmacist for all my meds, once he saw the chemotherapy drugs, he was very good about talking to me regarding any issues that may come up when I picked up my drugs every three weeks.  

Hoping that it isn't too bad for you and the waiting part is always the worst.

CurlyHair

Hi I am Kelly in Toronto.  I was diagnosed in July 2015 with serous ovarian cancer.  Have had two sets of chemo and a debulking to date.  Last chemo in May 2017.  Other than muscle and bone pain my body has handled treatments well.  Monitoring now and living day to day.  Aquafit exercises and trying to get back to a little jog/walk combo but have to do that slowly with overheating and breathing.  

MarilynOCC

Hi @Lakeview.  Welcome to OVdialogue!  Sounds like you have already discovered some helpful tips from other women on the site like medical marijuana for sleep and neuropathy.  I assume you also read the discussion specifically on neuropathy.  You might want to connect directly with some of the women who posted comments in that discussion.  You can use the @mention function to be sure they receive a notification or you can send them a private message if you like. Your diagnosis is so recent, it is good to hear that you are already able to say you are at a place of acceptance.  You may be able to help others who are still struggling with this.  We have a book called, By Your Side, which is a guide for women who have been recently diagnosed with ovarian cancer.  Have you received a copy?  If not, I would be happy to send you one...

MarilynOCC

Hi @CurlyHair.  Welcome to OVdialogue!  Glad to have you as part of the community.  I see that you have already checked out the discussion on recurrence.  We have a book called, Still By Your Side, which is a guide for women dealing specifically with a recurrence of ovarian cancer.  Have you received a copy?  If not, I would be happy to send you one.    

tigerlily

Hello, my name is Bren and I was diagnosed with Stage 4 a ovarian cancer three years ago.  I had severe pleural effusion before surgery, and a PICC line infection at the end of chemo that lead to a bacterial blood infection.  However, I have been in remission ever since, and although I have struggled with fatigue, I now feel like myself again. 

irishsurvivor

Hi  I am  irishsurvivor I was diagnosed in 2012  with high-grade serous carcinoma . Stage 3. I had first been misdiagnosed at clinic. They said I had a UTI.. Never had one in  my life and was surprised. Then when that did not go away they said I had yeast infection  which also I never had in my life. I continued being tired and being bloated and one time I had so much bloating I vomited. I had pain in my left side. I couldn't eat.. My husband forced me to go to go to Emerg and a Dr there saved my life. I told him I was never sick and didn't know why I felt this way now for 2 months . He got the ball moving by sending me for Ultra sound  and they immediately gave me CT scan and 1 day later I was told by my Dr I had Ovarian Cancer.I was sent to a wonderful Oncologist and he just got things moving right away I had 3 cycles of Carbo/Taxol and then I had surgery. I had a total a hysterectomy, BSO, omentectomy, pelvic peritonectomy, left ureteral lysis, pelvic node dissection and LAR with primary reanastomosis. After surgery I had 3 more cycles of Carbo/taxol. My chemo went well and I was very lucky never to be sick from it. I returned to work 6 months after and went for my regular check ups. In Jan this year my CA-125 level went up.. . Not a lot  but it had always stayed around 9-13 since my last chemo  so he brought me back in 3 mths. It went down again  but not back  in the normal range. He sent me for Scan and sure enough they seen a spot. So I had surgery again in July. I had resection of four small lesions in the omentum and the transverse colon mesentery. My follow up   in Aug my CA-125 is back at 22. So no chemo required because this was a slow growing cell and they took everything out that they seen. They will just monitor me closely . I live my live one day at a time and I stay very positive. I never really knew anything about Ovarian Cancer until this happened and now I like to pass it to every woman I know to make them aware. We are not alone.

midcanada

Hello everyone.  I am a 63 year old woman from Manitoba.

I was diagnosed as Stage 3 C serous high grade in March 2017.  I had three cycles of chemo and then surgery was attempted.....but was not successful as my disease was very widespread and I have many adhesions....so nothing other than an omental biopsy was done.  

I am now on my fifth chemo cycle since the failed surgery.  I am starting to have neuropathy issues in my feet.
  
My Ca 125 numbers have been dropping but I know that without the debulking surgery my chances for survival are way down.

I try to find the joy in each day.
 

CurlyHair

It is ok Marilyn.  Thank you for the offer but I have read some information provided by the hospital.  

CurlyHair

Hello midcanada.  Not sure what to say but put as much pressure on your doctors as you can to help you with the types of drug options available.  Ask them about clinical trials out there.  

midcanada

Thanks CurlyHair

MarilynOCC

@CurlyHair OK.  If you change your mind you can always order it on our website.  Thanks for letting me know  . 

meganG

I have just finished my third round of chemo which has been particularly difficult but I continue to read all the experiences of all of you and I am reminded there are so many of us dealing with so much.But the more women I meet or read about I am convinced we are a tough group  and knowing there are others who know what I am going thru somehow makes it easier.I have always since my diagnosis in 2014 been of the mind that I refuse to be negative in any way.Also may I say everyone should get a copy of By Your Side and Still By Your Side for those who are dealing with reoccurances.

Nanakaw

I was diagnosed in July 2015 in Victoria at 58 years with High grade serous Stage 3c. I had surgery 2 weeks later- complete hysterectomy, cervix, omentum and was optimally debunked. A month later I started dose dense chemo: Carboplatin and Paclitaxil for 18 treatments. Then a remission from Feb 2016 to March 2017 when a new CT scan showed metastasis to many abdominal organs. I started my 2nd line of chemo (same drugs) May 2017. I finished my 6th and final treatment last week and the tumours seem to be shrinking somewhat. That makes 24 chemos to date and I'm glad to be done for awhile. I'm hoping for a remission over the winter so I can get out cross country skiing again. I have neuropathy in my fingers and the balls of my feet which started after the last 2 treatments. I find that keeping active and especially walking really helps with getting through chemo. 

MarilynOCC

@tigerlily Hi, welcome to OVdialogue!  Good to have you in the community and good to hear that you are in remission and feeling more like yourself!  Fatigue can be so debilitating - how did you deal with it?  Perhaps you can help some others who may be still struggling with it...  

MarilynOCC

Hi @irishsurvivor.  Welcome to OVdialogue.  I'm glad you found us!  You have had quite a journey so far, like so many other women with ovarian cancer.  A few other women have mentioned that they were initially misdiagnosed too but it seems like you recovered well and went back to work fairly quickly.  Dealing with a recurrence is never easy and it sounds like your surgery was quite involved.  However, slow growth is good and great that you didn't have to have more chemo.  You might want to check out the discussion about recurrence and connect with others who have been through it too like @meganG @birdee @Quiltmama @CurlyHair

MarilynOCC

Hi @midcanada, welcome to OVdialogue.  It sounds like you have had a rough few months since your diagnosis. @CurlyHair made some good suggestions about talking to your doctors regarding different drugs that might be available or clinical trials.  Is there a possibility they might try surgery at a later date? 

You have a heavy load to carry and the fact that you say you try to find the joy in each day is very inspiring. How do you do that?  I'm sure others would love to know too.  

MarilynOCC

Hi @Nanakaw.  Welcome to OVdialogue!  Sounds like you have learned a lot about what helps you get through treatment.  And the fact that you want to get back to cross country skiing this winter is amazing!  I hope the neuropathy won't interfere with those plans.  You might want to check out the discussions about recurrence and neuropathy, if you haven't had the opportunity to do that yet...

midcanada

Thanks Marilyn,

I am delighted that I found this Canadian OC Forum---peer support is very important to me.  I find the shared information invaluable, especially as it's from Canadian and local members.   The other forums I use are from mostly USA or British members so those medical systems are very different from ours.

I do not know yet if surgery is ever an option for me.....I do not know if the adhesions would ever allow a debulking type procedure.  I need to take my head out of the sand, put on my big girl pants, and have a frank talk with my doctors.  I  was very shocked by my situation post op as my obs gyne team does do aggressive debulking procedures..... my treatment is being done out of a large city research based facility.  

I am just pleased that chemo was restarted post op  and that it seems to be working well. The whole treatment plan will be reassessed after one more chemo cycle.

As to my comment about finding joy daily.  
I have always been an optimist.  I have a wonderful, supportive husband, two marvelous daughters and their spouses, four amazing grandchildren, and a large group of other family and friends.  I have much to be grateful for, not the least is that the current chemo regime is making me feel better than I have felt in a year.  

I had a long difficult road to diagnosis...many fruitless visits to my FD with vague complaints...until last February, while on a holiday in Portugal, I became increasing ill and had to arrange urgent transport home, where I spent 10 days in hospital and was finally diagnosed.

So I am pain free now and can work round my chemo fatigue.  Spending time with family and friends, country drives, gardening and cooking, occupy the days I don't have to be at the hospital. Life is good right now.

amym85

Hi Everyone,

It's so lovely that a community like this exists. I appreciated reading all your stories and it was inspiring to see that there is life after diagnosis! I had a hysterectomy last week and received my pathology back today - stage II low grade serous ovarian cancer. I'm not sure what to think, as I underwent the hysterectomy because the doctors believed I had a uterine sarcoma, which has a very poor prognosis. My oncologist said that of the two cancers, I should be happy to have ovarian as it is the "better" cancer to get and at least one they can treat. It's hard to see this as a positive at this point, but I suppose it is.

I'm 32 and have struggled with endometriosis and infertility for years. I had two miscarriages with IVF and afterwards we were able to adopt our daughter in 2015. This past spring, my husband and I were attempting IVF again when they found a suspicious tumour in my uterus... And here we are. I look forward to connecting with others who are interested in fertility or adoption. I can relate to all the stories shared about how hard it is when people ask, "When are you going to have kids?" or "Why aren't you giving your child a sibling?" It's tough to answer because you either are a big downer or you have to laugh it off with a fake response ("Oh, we just love travelling so much! Haha!")

Sending lots of healing thoughts to everyone out there. 
x

Missy

Hi everyone.  I am 55 years old and live in Peterborough, On. I was diagnosed in February of 2017.  I went to the emergency dept thinking I had severe constipation or, at the worst, a bowel blockage because of extreme bloating. I was quite socked to receive the news that I had ovarian cancer. I was originally told I was stage IIIc but later informed I was likely stage IV due to small pleural effusions and lymph node involvement in chest.  I was given neoadjuvant chemo (4 rounds), followed by debulking in July.  The debulking was suboptimal because of a 1.5 mesenteric lymph node that couldn't be removed. There was also microscopic areas left behind.  I resumed chemo postop and am still on chemo.  My oncologist said we could go up to 10 total chemos.  Avastin was added as well and I will continue with the Avastin for a year.  My CA125 is decreasing but still not within the normal range.  The last one was 150.  I would be interested in hearing from other women who had suboptimal debulking and how they are doing now.
I am so grateful to have this forum as its Canadian and, as one user mentioned, most are US and UK.  

midcanada

 Hi Missy
I am pleased you have joined this forum, although none of us really want to be here.

I had an attempted debulking at the end of May 2017 after being diagnosed a few weeks after you...and like you, I am staged 3C, high grade serous, but I too had bilateral pleural effusions and a suspected lung lesion. Nine liters of ascites fluid was drained over two days at diagnosis. I had three cycles of Carboplatin/Pacitaxel before the surgery and my lung lesion vanished as well as almost all of the pleural fluid.

No lesion or organ removal removal was done at surgery due to advanced spread of disease and a massive amount of adhesions ....everything  was struck together.

I am currently on my fifth cycle of dose dense Carboplatin/Pacitaxel post-op......one more cycle to go and I will be reassessed.  My last CT scan in early August showed continued reduction in tumor load and my CA125 is at 419 from 5500 at diagnosis.

I am feeling very well right now.

We are some of the few I have read of that did not have optimal debulking and I too wonder about the future.

goodday

Diagnosed June 2013, grade 3c ovarian/fallopian high grade serous ca. successful debulking July. 16 weeks of Carbo/Taxol for residual disease. Aug. 2016, Carbo/Doxil for recurrence, with minimal success. Feeling good, CA 125, 1100 ish, but playing the wait and see game.

Caitsmom

Hi everyone!  I'm Rachel,  another one from Winnipeg.  I was diagnosed in April 2016 with stage 1 stromal OC. I had my surgery in June 2016 to remove my ovaries (I had a full hysterectomy in November 2011 when I was 33) followed by 18 rounds of dose-dense chemo. I'm currently on letrozole and doing well. Can't wait to learn more from others 

jojo305

Hi My name is Joanne From Dartmouth NS. My story started in Jan 2012 ( I turned 50 that year) when my period started and never ended, clots, water, heavy , light. In May I saw my Dr who suggested an ultra sound and a Gyno. In Oct after having a vaginal Ultrasound and a Uterine biopsy, I was told no cancer but lets do a retest in three months. Jan My DX came in Grade 1 endometrial Cancer stage 1a. Fast forward to March a full hysterectomy and lymph nodes. Ovarian Cancer, Mixed Epithelial carcinoma stage 1a within Borderland tumor. then followed by 6 rounds of Carbo/Taxol. My last treatment was September of 2013 three days before my first walk of hope. I have now walked in five. Feeling pretty good. Thank for staring this up.

MarilynOCC

Hi @amym85 Welcome to OVdialogue!  By the sounds of things you are probably still in shock about your diagnosis having just received this news.   Plus you were expecting to hear one thing and was told something different.  Its hard to process it all.  I hope now that you have had a few days to absorb the news that you are doing a little better but it often takes a while to come to terms with it, particularly, as you were in the middle of trying to conceive.  It seems you've gone from one end of the spectrum to the other. I'm glad you found the comments about this from some of the other women helpful.  You might want to connect with @BrittMK @jemgirljeri @Sunflower @jiselle16 @robinsm who have all commented about fertility issues.  

We also have a guide called By Your Side for women recently diagnosed with ovarian cancer.  Did you receive a copy at your treatment centre?  If not, I would be happy to send you one if you send me your mailing address.  You can do that by sending me a private message through OVdialogue or emailing me at msapsford@ovariancanada.org.  This book is free of charge and has lots of information about the disease and treatment as well as other relevant topics like caring for yourself, support and talking with your family/friends. Let me know if you would like a copy.